Fighting celiac disease

Common problem remains largely undiagnosed

June 17, 2012

Could you or someone you know have celiac disease? According to the National Foundation for Celiac Disease Awareness, about 3 million people in the United States have celiac disease, or roughly one percent of the population, and 95 percent are undiagnosed.

Celiac Disease is an autoimmune disorder believed to affect at least one in 133 people.

It is an autoimmune response in which antibodies attack the villi in the lining of a person's small intestine in the presence of gluten. Treatment of the diet is straightforward: a strict gluten-free diet throughout a person's life.

Gluten is a protein found in wheat, barley, rye, semolina and less commonly used grains like spelt, kamut and other members of the triticeae family. Many people with celiac disease also have problems with oats, although the reasons are not well understood.

While it is said that around one in 133 people have the disease, but a 2011 study by Center for Celiac Research and the Mucosal Biology Research Center at the University of Maryland School of Medicine suggests the prevalence of the disease has been on the rise since the 1950s.

A 2009 study by the University of Minnesota and Mayo Clinic researchers claims incidence of the disease has quadrupled in the last 50 years.

Symptoms of celiac disease can include moderate to severe diarrhea, bloating or gas, skin itching or rash, constipation, fatigue, mouth sores, and tingling or numbness.

As absorption problems in the intestine increase the more the villi are damaged, many of the symptoms people with celiac disease develop are similar to results of malnutrition, like liver problems, bone loss, dental problems and night blindness. These symptoms are often ignored or attributed to other conditions or lifestyle habits, therefore celiac disease is often not considered and the condition remains undiagnosed.

Some people with the disease show no symptoms at all. Some children who are symptomatic will fail to grow and develop properly until put on a strict gluten-free diet.

Since the symptoms associated with the disease are very much like those of other illnesses, many are undiagnosed, or have been misdiagnosed with another illness. Because it can take four to six hours for food to reach the small intestine and symptoms may not appear for many hours later, it is difficult for a person to make the connection to consumption of wheat-based products with illness.

Diagnosis is also complicated, as there are three types of clinical tests which can be interpreted in different ways. Further, many doctors are simply not aware of the disease or may associate symptoms with something more commonly seen.

Other autoimmune disorders such as Type 1 diabetes and thyroid disease can accompany celiac disease.

Intestinal cancer is also more prevalent among people with celiac disease due to repeated injury to the villi in the small intestine, making a gluten-free diet critical to long term health, not just daily comfort.

A study by the FDA recommends less than one part per million (ppm) or 0.015 milligrams of gluten to avoid adverse clinical effects. According to various sources, a bread crumb can contain 10 to 50 milligrams of gluten, which is more than enough to trigger a reaction.

Because safe levels are so low, living a gluten-free lifestyle can be very challenging for individuals with celiac disease. Many products which do not have added gluten ingredients have been cross-contaminated with gluten during manufacturing and transport. Therefore, foods made in dedicated gluten-free facilities a preference for most people with celiac disease, but also increases manufacturing costs.

Food labeling is also an issue for people with celiac disease. A loophole in Food and Drug Administration (FDA) policies allows for certain proprietary flavorings to be labeled as "natural flavorings" which can include gluten-containing flours or other allergens.

In 2004, Congress passed the Food Allergen Labeling and Consumer Protection Act which, in part, required disclosure of gluten in foods. The rule was also supposed to develop a standard for what can be designated "gluten-free" on package labels.

In July of 2011, U.S. Senators Ron Leahy (D-Vt.) and Ron Wyden (D-Ore.) wrote a letter to the FDA. The letter stated, "The regulatory uncertainty surrounding FDA's inaction has led to a proliferation of 'gluten free' standards and labels provided by 3rd party groups. This creates confusion for consumers, and hesitancy amongst producers on what their requirements will be."

In August of 2011, a comment period was re-opened on the FDA's website to allow public input regarding the rule. To date, no action has been taken.

Many manufacturers of gluten-free foods state on packaging the use of dedicated facilities in manufacturing; others do not. This makes it difficult for an individual to determine which foods may have been the culprit following an unexpected bout with symptoms.

Paula Yoder-McMahon, who is in charge of purchasing strictly-labeled gluten-free products for Tops Markets, said the grocery chain has a strong focus on increasing availability of gluten-free products to area consumers.

"I ask people to try and imagine what it's like to on one day, be able to eat normally, then go to the doctor and find out you have to make this huge change and suddenly, you don't know what you can eat. We want that newly diagnosed customer to be able to walk in and know what to do. We want to make this lifestyle easy for people," she explained.

Yoder-McMahon also said sales of gluten-free products have been steadily rising. "At Tops, our sales of gluten-free products have grown by double digits over the last 5-10 years. It's increased by 15 percent just in the last six months," she said.

"We find celiac disease affects everyone, any income level, any race. What characterizes the gluten-free shopper is that they want variety and have different preferences for flavor profiles," Yoder-McMahon added.

Typically, gluten-free breads and pastas are made with varieties of rice and other grain flours such as corn, teff, and sorghum. Gluten is the protein which becomes elastic during the kneading process, so it is the ingredient that gives bread it's characteristic chewiness. Manufacturers use ingredients like tapioca starch and xanthan gum to mimic wheat-based bread characteristics and potato flour to enhance flavor.

Yoder-McMahon explained the variety of gluten-free products has expanded greatly over the last several years. "Bread and baking mixes have always been important items, but now the move is slightly away from mixes and more is available in ready-to-eat. It's also much easier when you have the big brands coming on board like General Mills."

General Mills, one of the world's largest food producers, has introduced several gluten free versions of high-profile items. The Betty Crocker brand of foods, owned by General Mills, now produces four varieties of baking mixes, including chocolate chip cookies and cakes. Further, General Mills has taken steps to identify and feature foods that are naturally gluten free, such as some of the Progresso brand soups. Rice Chex cereals are now manufactured in dedicated facilities and feature the words "gluten free" prominently on the label.

Yoder-McMahon expects this trend to continue, and for consumer interest to grow.

"We only expect to see growth in this area," she said. "The flavor profiles have improved so much over the last few years, that now people are no longer making separate meals at home. Now, more people (who have someone with celiac disease in the family) are making the entire meal gluten-free, because the food tastes just as good. And lots of other people are going gluten-free simply because they feel better, so we only expect to see increased growth."